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I Am Pregnant And Have A Factor 7 Deficiency. Any Factor 7 Ladies Have Advice For A Safe Pregnancy And Delivery?
You are very welcome! I did have a natural birth but the pain was rough, they wouldn’t give me anything for the contractions. Also, for post birth, make sure they do a follow up on your levels. My… read more
Why No Blood Testing????
Since 1996 I have only had my blood timed to see how long it takes to stop bleeding. Should'nt the doctors have done other tests to find out about factors and other things?
When I was diagnosed back in 1987, I had several bleed time tests done. Since then I have been told that they no longer do that type of test. I was not given a reason why.
How Is Ankyloglossia Managed For An Infant's Feeding If A Bleeding Disorder Is Diagnosed?
Would cauterization be the procedure to get the baby's tongue in milking condition?
Depends on the severity of the structure. A lot of MDs feel that no intervention is really needed
Is Ok To Use A Topical Anti Inflammatory?
I use Diclofenac cream with no problems. I can take small doses of NSAIDS infrequently, but they don't "sit well" with my guts...and they REALLY cause bleeding/bruising problems for me. (I still use… read more
Need Help Finding Others With The Same Very Rare Coag Profile
Recently encountered a 6 year old kid that has the following coagulation profile...Severe F8 deficiency, very mild F9 deficiency and a low titer F8 inhibitor...does anyone else have the same profile???
My son is 6mo old with f8 severe. I am 30 with f8 moderate, low vw but so far he has no inhibitor but i have no inhibitor perse but no tolerance to stimate as it was no longer effective.
I'm Wondering Does Hemophilia Cause Us To Have More Intense Pain Than Normal People???? My Pain Has Become Almost Unbearable At Times.
Isn’t pain relative to the person that feels it. Since I’ve grown up bleeding I don’t try to compare to a “normal” who hasn’t had regular bleeds. I only compare my pain to myself. So if you are… read more
I Have Von Willebrands. I Have Spontaneous Bleeds Under The Skin. I Also Have Joint Pain. Do VWD Patients Bleed Into Their Joints?
I’m so sorry that seems like it would be miserable
I Am Wondering About Fatigue With Mild VWs.
My VW is mild, so I have not always given it the credit it deserves in causing complications in my life. But I was diagnosed with idiopathic hypersomnia (non REM narcolepsy) several years ago. I found out a year and a half ago I was misdiagnosed and had iatrogenic hypersomnia caused by an antidepressant. I thought I was completely cured when I stopped taking that medication, and my improvement really is a miracle. But I have always been a little more fatigued than the average person. I always… read more
I get extremely fatigued even tho I’m mild...also looking for fatigue relief
Has Anyone Been Told They Have Microbleeding In The Joints?
I switched to an extended 1/2 life Factor VIII product for prophylaxis and that seemed to eliminate ankle microbleeds.
What Is Protein C Defecasy And Protein S Defecasy
I will be too i also have protein s defecasy
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